Patient Perspectives on Potential Implementation of Coordinated Family Care Visits for Inherited Cardiovascular Disease

This medRxiv preprint reports on a qualitative study exploring patient perspectives on implementing coordinated family care visits, specifically shared medical appointments (SMAs), for inherited cardiovascular disease. Since multiple family members often require ongoing cardiac care and screening, family SMAs could facilitate communication and comprehension of the condition compared with the existing individual clinic model.

The researchers conducted semi-structured interviews with 16 adult family representatives from families seen at both adult and pediatric inherited cardiovascular disease clinics at Stanford Health Care. Interviewees had a mean age of 43.4 years and had been followed for a mean of 7.3 years. Transcripts were coded using content analysis.

Results showed 81.2% (13/16) of families would find family SMAs beneficial. Among the 12 interested families, benefits and challenges fell into two categories: care quality, and access and logistics. Specifically, 83.3% (10/12) thought family SMAs would increase understanding among adults, children, and providers, and half (50%, 6/12) saw logistical/access-based benefits. Identified challenges included less individualized care, privacy concerns, and concerns about the smoothness of coordinating a family SMA.

The authors conclude that most families believe a family SMA model would add benefit but that it requires thoughtful implementation tailored to each family's unique needs.